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Sudden Unexplained Death in Epilepsy (SUDEP):

What You Should Know

Most people with epilepsy live a full life span. However, there are potential factors associated with living with epilepsy and seizures that may increase the risk of early death. Although Sudden Unexpected Death in Epilepsy (SUDEP) is not well understood, it is suspected to sometimes be related to heart rhythm problems during a seizure. SUDEP occurs more often among people with convulsive seizures, especially generalized tonic-clonic seizures that are not well controlled. More research is needed to fully understand what causes SUDEP.

A death is referred to as a "SUDEP" when a seemingly healthy person dies unexpectedly and no reason for death can be found. The most common criteria used to determine whether a death is due to SUDEP are (Leestma, et al 1997):

The person had epilepsy, defined as recurrent unprovoked seizures.

The person died unexpectedly while in a reasonable state of health.

The death occurred suddenly.

The death occurred during normal activity, often during sleep and found in or near the bed.

An obvious medical cause of death could not be determined at autopsy.

The death was not the direct result of status epilepticus.

While SUDEP can happen to anyone with epilepsy, some people are at higher risk than others. Commonly associated risk factors include:

Poorly controlled seizures

Treatment with multiple anticonvulsant drugs

Having long-standing chronic epilepsy

Other risk factors include:

Generalized tonic-clonic seizures

Seizures that happen during sleep

Not taking anticonvulsant medicines as prescribed

Stopping the use of anticonvulsant medicine abruptly

Developmental delays

Onset of epilepsy at a young age

Information on this page was taken directly from the Epilepsy Foundation website. Find out more about SUDEP and the SUDEP Coalition.

Visit the PAME (Partners Against Mortality in Epilepsy) for more information and upcoming webinars.